30 DAYS/30 STORIES® 2021
Our 15 year-old son, Jack, was diagnosed with Very High Risk Acute Lymphoblastic Leukemia February 2019 at the age of 13. He is currently in treatment, and our family would like to share with you one of the many side effects Jack endured from his treatment with Leukemia that now requires him to use a wheelchair outside the home. About 14-15 months into treatment, Jack started to experience pain in both of his ankles and eventually required an MRI. He was diagnosed with Avascular Necrosis. A couple of months later, he started to have pain in his knees and required another MRI, which showed that he also had Avascular Necrosis of both knees. Jack started physical therapy for the AVN to help strengthen his joints. In August of 2020, he was at Children’s Hospital of Philadelphia for another reason, and they requested to do more tests on his hips and shoulders. It was these tests they found Avascular Necrosis of Jack’s shoulders, but his hips were fine.
During the next 8 months, he was doing PT, was referred to a physiatrist, and then was referred to aquatic therapy to help with the Avascular Necrosis. In February and March 2021, he had repeat MRI’s and they showed progression of the AVN resulting in what the physiatrist called End Stage Avascular Necrosis of the left knee and both ankles. In April 2021, Jack was referred to University of Pennsylvania but unfortunately there was some issues with his insurance. So he was referred to Shriner’s Hospital for Children in Philadelphia and was seen by a wonderful doctor who did lots of tests on our son. Due to the complexity of the AVN, he was referred to CHOP to see a pediatric orthopedic oncology surgeon. We were told at CHOP that they would like to hold off on any intervention at this point, so they did not have to disrupt any of our Jack’s chemotherapy treatment. They suggested continuing with the therapy and to use the wheelchair continuously to prevent further joint collapse due to the results of the recent MRI’s.
The pain over time got a little worse, and he was having difficulty propelling himself in the wheelchair independently, so a referral was put in for Good Shepherd Rehabilitation Hospital Wheelchair Mobility Clinic to get evaluated for an electric wheelchair. In July, Jack was evaluated for the most appropriate chair, and he was able to choose between an electric wheelchair or a scooter. Jack chose the scooter and as of September 1st we are waiting of the arrival of his scooter.
After almost 3 years, Jack has returned to school this past August 30th and is in the 10th grade at Parkland High School. He currently is struggling with his standard manual wheelchair at school due to the AVN in his shoulders and has students and staff push him to his classes. Once his scooter arrives, Jack will have more independence then ever versus his current chair. Even though Jack hoped to return to the sport he so loved, he has come to the realization and has accepted the fact that due to his Avascular Necrosis and the future possibility of joint replacements he will no longer be able to play football per his medical team.
The Pediatric Cancer Foundation of the Lehigh Valley has been very supportive to our family the last almost 3 years as well as many other families in the Lehigh Valley. PCFLV has been there for our family every step of the way. During the past year and a half during Jack’s decrease in mobility and requiring a wheelchair, they not once forgot about our son. They have always included him in many activities they offered in person and during the pandemic when they had to do everything via Zoom. If Jack couldn’t attend either by Zoom or in person, they were dropping the activity off at our home… even items for the parent activities. We couldn’t thank this foundation enough for all they have done for all the pediatric cancer families in the Lehigh Valley.
Written by Jack’s mom, LeeZa
Please consider donating in Jack’s honor to support PCFLV's mission.
Please also consider helping local kids with cancer by donating blood at Miller-Keystone Blood Center:
Photography by Matthew Cannon